Medicines/Can we ever get off them!!!

After my surgery, in 1991, I was off from all medicines for years... 20+ years, to be exact. All I ever took in the 80's was steroids and Azulfidine.

I had very little pouch problems through all of that time.

Fast forward to 2012, and I started with issues. Have been searching for help with my new "pouch changes" for 2 years, almost.

Over the past 2 years, I've been on more meds than I was on in two decades, searching for answers: proton pump inhibitors, antibiotics, probiotics, vitamins, histamine blockers, Canasa, etc.

Last week did a steroid taper, and now am on Humira.

While I am very glad I had two decades without meds, things are not "the same" anymore, and I'm finding I now seem to need medicines, etc.to feel better. Life is short, and I want to feel well while I'm here, so I'm not sad that I'm back on something. My daughter is on Humira, too, along with MTX for her indeterminate colitis, and hubby will be switching from Enbrel to Humira for his psoriatic arthritis, too. Can anyone say Family Pack? lol You should see our kitchen table... hubby is on about 4 other meds besides his biologic, along with antihistmines and occasional NSAIDS; kid takes Folic Acid and Vitamin D, along with her weekly MTX and Zofran; I'm on BCP, Vitamin D, occasional magnesium, Align... bottles and bottles and boxes of meds EVERYWHERE. I totally understand! And we're 43, 41, and 12 years old! Too young for all that, right?

Anyway, my wish is for all people to be off meds like I was, even for a run. It can happen for some. It was nice... believe me! After 9 years in my childhood of 8 Azulfidine a day, plus steroids and all the other vitamins, etc. my parents made me take, I was THRILLED to not have to take ANYTHING after my surgery. I was also blessed to never need Lomotil or Immodium or Metamucil, etc.

So... yeah, it can happen, and if it doesn't? I feel your pain.

quote:

I thought after a year you would start not needing all your medicines.

I did not need medicines for about 2 years after surgery and since 1995 I have been on antibiotics chronically to treat pouchitis/bacterial overgrowth in the J Pouch.

A colectomy cures you of UC, but it does not cure you of the underlying autoimmune disease which caused the UC. Autoimmune disease is systemic. How it manifests in any individual will determine whether medication is necessary. There is simply no way to know how your body will react over time to the J Pouch. Hence Rachel's experience, and mine, and others who need no meds at all. It is all a highly individualized question. People post this question a lot looking for black and white answers, and none are to be found.

I think what matters most is the quality of life issues with/without medications. If there are medications to treat our issues and we respond to that treatment, then we are or should feel fortunate. There are some people on this board who have issues that are not responding to medications at all.

I understand now. I was diagnosed with UC but after we got the results back from colonoscopy is when I found out I had dysplasia (pre cancer cells) through out my whole colon. We waited four months to get my colon to calm down and retest me and it had got worse. So that is why my colon is out. I do have some great days and I even went back to work after being a stay at home mom for 20 years. It is hard but at least I am getting out of the house. It helps but I hate mornings. Sometimes I wonder if I am ever going to get out of the house..... on time!!! thanks so much for both of your inputs. Sure helps out a lot. One thing my GI doctor will never put me on is a steroid. He said, they are no good and we find other ways to solve other issues. I am glad he is looking out for me

I've been taking canasa daily for cuffitis for several years and have finally realized with the help of my doctor that I need to take antibiotics most of the time as well. I'm rotating between 2 now. CT Barrister's explained why some of us end up needing to do this well.

I was afraid to become antibiotic dependent. My GI says that the doses we take for pouchitis are low compared to major infection dosing. He has never seen someone taking them as such get ill with something else and have problems getting better with stronger or larger doses of antibiotics. I looked in the mirror and laughed at myself. I'm 58 and not going to live another 50 years anyway so I'm taking the antibiotics and not giving it another thought.

I won't take prednisone again either. They say never say never but never 60 mg doses.............